Hard to believe on the 14th of January this year 2020 it will be one year since Dr Sen gave me the piece of paper with the words no sign of any FDG take up in the pet ct scan, which equated to no signs of any cancer in my body. Well a year has passed since I last saw Dr Sen, he now wants to see me on an informal basis once a year until I reach the magic 5 years. It was good to see him at Leeds cancer centre and he is very pleased with my progress and also impressed at how many views over 13,000 worldwide the blog has reached in the last year. We chatted about the rise in HPV driven cancers, as I am also noticing more people contacting me in the last 6 months. At any given time I have at least 20 people in varying stages of treatment and many more of us having successfully completed treatment and on the road to recovery.
One comment I did make was the fact that everyone who comments to me, all have the same gripe; why are they told in a matter of weeks you will start to feel normal, so here’s hoping the parameters will eventually be changed along the lines of some people may feel normal in a matter if weeks, many will take longer. Unfortunately it’s not a one size fits all recovery, there is no magic tablet we can take.
As for me I still have a 20 min lunch time nap most days, I have finished acupuncture treatments for now as I feel they did their job in kick starting things.
Going forward what’s next, well according to the NHS, when I reach 2 years post treatment, what I have with regard to saliva output, eating and general well being is normally as good as I will be. However recent studies in the USA are extending that period to 3 years so that will be interesting to see.
Top tips which I have put in earlier posts, but people keep asking for them.
Make sure you get prescribed Duraphat toothpaste which I need for rest if my life.
Find a soft toothbrush I use Curaprox 5400 individual bristles. amazon sell them.
A humidifier for bedroom I also found useful during and after treatment, mine was a Cool mist brand name again Amazon.
Your hospital should give or loan you a nebuliser, you can use plain boiled water if the saline dries you out, I used mine when mucus was at its worst up to 6 times a day.
Before treatment sets in and makes eating hard, try and bulk up, it’s almost always inevitable their will be weight loss, purely because it’s our mouth and throat area that takes a battering from chemotherapy and radiotherapy.
Ensure, Fortisips or whichever high calorie food supplement your dietician prescribes they aren’t nice but you do benefit from the extra calories. I started diluting them with water. Extra bonus you get extra hydration at the same time.
After treatment finishes keep a record of what you are eating and drinking it helps you and also the dietician. I was told I needed a minimum of 2000 calories and 2 or 3 litres of water in first year after treatment.
Dry mouth; sorry imagine your worst every hangover mouth! Well you may have that every day for a while but forewarned is forearmed. I still use half an Xylimelts tablet, pop it in your mouth before bed. It helps me to sleep so that I get at least 8 hours with odd sips of water during night. I get them online from the mouth ulcer company, just keep them away from pets as they are poisonous to dogs and cats.
My eating is almost back to normal now, I still can’t eat anything spicy, it may come back it may not. Don’t be surprised if your favourite foods have been replaced by things you didn’t like pre treatment it seems common among fellow sufferers.
What got me through treatment was positive mental attitude, cancer wasn’t going to define me and I would like to think that’s the case. John and I now look at it as a blip in our life. On a plus side we’ve made many friends and acquaintances through this blog and the cancer forums that I will continue to support as long as someone out there needs me. The blog will continue to be updated as and when I have something new to say or I have found out an interesting fact.
Christmas was a lot more hectic than last year, Christmas Eve buffet was for 13 of us and Christmas Day Lunch 10 of us all at our house.
See below for the tribe photo
How did I cope, well it was organised with military precision, lots of lists and some delegating. Food wise it wasn’t my best day, meat can still be difficult to eat Pork and Turkey just didn’t want to go down. Plus I started with a cold a few days before the first proper cold since treatment began in July 2018. When talking to Dr Sen he did say colds will linger longer due to immune system being compromised by the chemotherapy, so it’s a point to bear in mind. This year we both had the flu jab, I couldn’t have it last year due to pet ct scan not being until January, I wasn’t allowed to have any live vaccines.
Well what’s next for us: Spain is beckoning so will soon be back on our bikes.